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Refusal of Care: The Physician-Patient Relationship and Decisionmaking Capacity

Refusal of Care: The Physician-Patient Relationship and Decisionmaking Capacity
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    This article was srcinally published in a journal published by Elsevier, and the attached copy is provided by Elsevier for the author’s benefit and for the benefit of the author’s institution, for non-commercial research and educational use including without limitation use in instruction at your institution, sending it to specific colleagues that you know, and providing a copy to your institution’s administrator.  All other uses, reproduction and distribution, including without limitation commercial reprints, selling or licensing copies or access, or posting on open internet sites, your personal or institution’s website or repository, are prohibited. For exceptions, permission may be sought for such use through Elsevier’s permissions site at:    ETHICS/CONCEPTS Refusal of Care: The Physician-Patient Relationship andDecisionmaking Capacity  Jeremy R. Simon, MD, PhD  From Center for Bioethics and Emergency Department, Columbia University Medical Center, NewYork, NY. Problems of refusal of care, among the most common ethical dilemmas in the emergency department,are also often the most difficult to resolve, pitting 2 conflicting duties, that of helping patients and thatof respecting their autonomy, against each other. Using a case presentation as a backdrop, this articleoffers a practical approach to patients who refuse treatment, including assessment of decisionmakingcapacity but emphasizing the role of trust, communication, and compromise in these cases. [Ann EmergMed. 2007;50:456-461.] 0196-0644/$-see front matterCopyright  ©  2007 by the American College of Emergency Physicians.doi:10.1016/j.annemergmed.2007.04.016 CASE  An 82-year-old man was brought to the emergency department (ED) by ambulance after vomiting on a bus. Hereported 3 days of nausea without vomiting. The patient deniedpain, as well as any medical history, surgical history, ormedications.On examination, the patient was a well-developed, well-nourished man in no acute distress. Vital signs were bloodpressure 150/90 mm Hg, pulse rate 103 beats/min, respiration14 breaths/min, and temperature 97.7°F. The only finding onphysical examination was a pulsatile midabdominal mass. Hisneurologic examination, including Mini-Mental StatusExamination, was unremarkable; he was cooperative withappropriate affect but appeared wary. Computed tomography revealed an intact, 8 cm, abdominal aortic aneurysm.The patient, told that the aneurysm would likely be fatal if not repaired, refused surgery, saying he did not like physicians.He acknowledged that he therefore would probably soon diebut would not discuss the issue or give family contacts. At thispoint, the team considered admitting him involuntarily. DISCUSSION Problems of refusal of care, among the most common ethicaldilemmas in the ED, are also often the most difficult to resolve,pitting our duty to help patients against our duty to respecttheir autonomy. Often, the approach to such cases consistssolely in assessing the patient’s decisionmaking capacity. A patient who refuses care either has capacity and should bedischarged against medical advice (AMA) or lacks capacity andmust be treated against his will. Using this approach, casediscussions of patients who refuse recommended treatmentoften immediately jump to a discussion of capacity. Focusing onthis technical question, however, obscures what is usually ourprimary obligation in these cases: understanding and, if possible,addressing the patient’s underlying reasons for refusing care. Inthe majority of cases of refusal of care, the problem is a failurenot of capacity but of communication. 1 The patient does notunderstand us, or we do not understand him or her. In thesecases, we have failed to meet our ethical responsibilities to ourpatients if we simply discharge them AMA. We are obligated todo our best (without coercion) to help patients overcome theirreluctance to accept care that is in their best interest. Only by talking to them, to find out what their concerns are and torespond to these concerns, can we do this. Even with patients who lack capacity and will not be allowed to refuse care, suchcommunication is important because it may help us devise a plan with which the patient will cooperate, such cooperationbeing ethically and technically preferable to struggling with a combative patient.The approach outlined in this article to patients who refusecare, emphasizing that good physician-patient communication isat least as important as the ability to assess capacity, helps avoidthe pitfall of the “AMA/no capacity” dichotomy, which is not tosay that a consideration of capacity is only necessary when allelse fails. If lack of capacity is self-evident, we must immediately look for a surrogate decisionmaker (if circumstances permit).Likewise, before a patient decides on a care plan, we should becomfortable that he or she has the capacity to do this. Thus, inactual practice, communication and capacity assessment occurin parallel. In concept, however, our primary concern must bepreventing intractable conflict rather than resolving it throughcapacity determinations. Therefore, our consideration of theproblem of refusal of care will begin with a discussion of methods for preventing, or at least minimizing, these conflicts.Only then will we turn to issues surrounding capacity.456  Annals  of    Emergency Medicine Volume  , .  :  October    Preventing the Problem: Enhancing the Physician-Patient Relationship Because, as we mentioned above, most cases of refusal of careare a result of poor communication, the first object of ourattention in such cases should be this communication and therelationship that frames it. Thus, when disputes arise, we shouldexamine the physician-patient relationship to see how we canstrengthen it. Likewise, forming a good relationship initially isthe best way to prevent these disputes.Developing such a relationship requires effort, particularly inthe ED, with its pressures and distractions and the short timeavailable to interact with patients we do not know. Several skillsand virtues are involved in developing this relationship or inrepairing it if we notice signs of a problem, such as a patient’srefusal of care.The primary skill is clarity in communication. Oneimpediment to forming a therapeutic alliance can be thepatient’s failure to understand us. Physicians forget how much they learned during training, often using termsincomprehensible to laypeople. We must use language patientsunderstand. A patient who does not understand us is unlikely to accept our recommendations. A patient who understands us but still declines to follow ouradvice may not trust us. Placing one’s health in the care of a stranger requires deep trust. There are many ways of fostering trust during a brief ED encounter. Responding to a patient’ssmall immediate needs, such as an extra blanket, shows that hisor her interests are important. Assuring the patient that you willinvolve their primary physician allows you to tap into the trustthe patient has for that physician. If some distrust has already surfaced, a simple statement that you have the patient’s bestinterests at heart may help. Besides all of these strategies,however, the best tool for establishing trust is attention. A physician, standing between stretchers, distracted by surrounding events, seemingly in a rush to move to the nextemergency, may not inspire trust. Such behavior isunderstandable, even natural, in the ED but must be avoided.Our patients deserve our full attention, which does not meanignoring the rest of the ED but simply that, at the moment weare with a patient, the patient must sense that our encounter isof primary importance. The ability to convey this focus is anessential skill. Exercising this skill may require patience, anessential virtue here, for we may need to let the patient talk, andthink, for longer than we might otherwise want. This extra time will be well rewarded.Empathy is the second essential virtue for developing trust. A patient who thinks that we not only are listening to him or herbut also appreciate his or her distress is more likely to enter intoa therapeutic alliance with us. An encounter imbued with attention, patience, and empathy  will not only foster trust but also help the patient talk. Only if patients open up to us can we discover their concerns, especially those that may prevent them from accepting needed care. Thereare many such issues we may uncover. Brock and Wartman 2 mention, among others: failure to adequately consider the long-term consequences of a choice, inordinate fear of pain, andfailure to consider low-probability but high-cost outcomes. Tothese we may add denial, need to maintain control, and fear of being stigmatized. This last may be especially prevalent among patients who expect to be admitted to AIDS floors. Whateverthe issues, we cannot help patients deal with them, as by explaining that there is no AIDS floor, unless they talk to us. Mitigating the Problem: Negotiation Improved communication may thus help us prevent ourproblem altogether. However, the effort we put intostrengthening our relationship with our patient will aid us evenif, despite the effort, the patient refuses care. Often, there isroom for negotiation, for which understanding andcommunication are again essential. We generally recommend toour patients the plan we consider optimum. However, there areoften other acceptable possibilities. All reasonable optionsshould be explored. Perhaps a patient who refuses admission fora major evaluation will agree to tests in the ED. If so, order thetests, even if they are normally done for inpatients only. If positive, the results may convince the patient to accept care. If negative, it may be easier to discharge the patient comfortably.The more information available, the easier it is to reachagreement. If a patient continues to refuse, offer to call family,friends, clergy, or a personal physician with whom he or shemight be willing to talk and who might prevail on the patient toaccept treatment.Sometimes, when further care in the ED is not an optionand the patient must either be admitted or sent home, actualcompromises in the care plan may be necessary. Consider a patient who refuses to be admitted for an urgent cardiaccatheterization planned to occur in 6 hours because he has noteaten all day and refuses to remain with an empty stomach any longer, as the cardiologists insist. If he persists in this refusal, heshould probably be allowed to eat. Certainly, his eating may delay the catheterization, which would be undesirable.However, the patient may be more amenable to consenting totreatment when he is not having acute hunger pangs. Better todefer the catheterization overnight because the patient ate thanindefinitely because he left the hospital AMA. Finally, evensomeone who refuses all interventions, consultations, andvariations in the plan may agree to be admitted overnight forobservation. He does not have to agree to the whole plan for usto begin carrying it out step by step as he consents to it. Although observation itself may add little to the care of somepatients, admitting the patients gives us, or perhaps initially unavailable family and friends, more time to discuss with themtheir objections and perhaps convince them that treatment is intheir best interests. Once a patient has left AMA, however, he orshe is unlikely to ever return. We emphasized above that communication is essential even with patients we believe lack capacity. Anticipating ourdiscussion of capacity, which follows below, one might ask why  we should negotiate with a patient we believe lacks capacity. Simon  Refusal of Care Volume  , .  :  October    Annals  of    Emergency Medicine  457   After all, many of these patients are difficult to talk to, and evenif we can talk to them, we will not ultimately let them refuse, so why bother? Certainly, there are patients who so profoundly lack capacity, because of severe dementia, for example, that any conversation is pointless. However, for those patients with whom we can talk, whether we are sure they lack capacity ormerely suspect it, discussion and negotiation are still vital. First,it is always ethically preferable not to coerce patients intotreatment, whether or not they have the capacity to refuse it.Second, as we mentioned above, whether or not the patient hascapacity we will often need his or her assent and cooperation tocarry out any treatment plan, which may require compromiseseven with patients who lack capacity. What would be good for a compliant patient may not be best for one without capacity who will not cooperate with the standard treatment for a condition.If the patient will not take antirejection medications, perhapsthe kidney transplant he or she is refusing must be replaced withdialysis, even if that would otherwise be suboptimal.There are 2 further points to make about these negotiations,both of which apply regardless of the patient’s capacity. First, itmay appear that in some cases there is no room for compromise.This is true only in a limited set of cases. The occasions whenan immediate decision on essential therapy is necessary, ruling out even the option of admission without treatment, are few. Inall other cases, some negotiation should be possible. Second, wemust avoid manipulation and coercion in these negotiationsbecause that would violate the same autonomy we seek torespect by allowing patients to choose their own course of treatment. Decisionmaking Capacity  Sometimes, during our discussions with a patient, we may begin to suspect that the reasons for refusal lie not in thecommunication issues we have been discussing but in thecapacity to make appropriate choices. When this happens, inaddition to our negotiations, we must assess the patient’sdecisionmaking capacity. If the patient has capacity, we shouldabide by his or her choice. However, if the patient lackscapacity, we must turn elsewhere to determine how to treat himor her, even, indeed, if the patient agrees with the proposedcare.Often, there will be little doubt about a patient’s capacity, asin the case of the severely demented patient, or, conversely, the well-groomed coherent young man who agrees to anappendectomy. To be able to determine capacity in other cases, we must first understand the concept.Let us begin by considering why we are required to respect a patient’s choices. This requirement is grounded in 2presumptions. First, we want to maximize a patient’s good, and we have concluded that, generally, people are best at knowing  what is best for them. Second, we believe there is value inrespecting people’s autonomy, allowing them to make their owndecisions, regardless of the benefit particular decisions bring them. 3 Consideration of these presumptions makes it clear that notall patient decisions must be respected. If the patient is  not   ableto determine what is best for him or her or if, in choosing, thepatient is not acting autonomously, our reasons for respecting the decision are reduced or removed. In that case, our obligationto protect and benefit the patient comes to the fore. Thequestion of decisionmaking capacity, then, is the question of  whether a patient’s decision expresses the choice of anautonomous person capable of determining what is best forhimself or herself. With this understanding, we can appreciate a practicalaccount of decisionmaking capacity. An oft-cited report of thePresident’s Commission states that decisionmaking capacity comprises 3 attributes: the possession of a set of values andgoals, the ability to communicate and to understandinformation, and the ability to reason and deliberate about one’schoice. 4 How do these criteria capture the presumptions wediscussed above? First, to choose what is best for oneself, onemust have a sense of what outcome would be best (“a set of values and goals”), “understand information” about the currentstate of things and the options available, “reason” about how different choices will lead to different outcomes, and (trivially)“communicate” one’s choice. If any of the requirements arelacking, one cannot reliably make decisions leading to one’spreferred outcome. Autonomy, too, is expressed in theseattributes because the essence of autonomy may be said to bethe possession of one’s own set of values and goals and theability to act on them as one sees fit. If one lacks these goals or isincapable of correlating one’s actions to these goals, one cannotact autonomously.  Assessing Capacity  In practice, we need more than an abstract understanding of these attributes. To determine whether a given patient hasdecisionmaking capacity, we must be able to assess whether heor she possesses them. Ultimately, we can do this only throughattentive conversation with the patient. The following 3-stepprocess can help elicit the required information.First, give the patient all relevant information: his or hercurrent condition, the therapeutic options (including doing nothing), and the risks and benefits of these options. Thisinformation must be understandable (as discussed above),complete, and accurate. Completeness means giving the patientall of the information a person needs to make this decision. Accuracy entails not only giving correct information but alsonot exaggerating or underplaying facts to influence the patient.Telling a patient she will likely die if she leaves when you know the risk of death is 1 in 50 is essentially lying and violates thepatient’s right to make free and informed decisions.Next, have the patient paraphrase what you have just said, which allows you to assess his or her understanding of what youhave said, as well as to correct any misimpressions that havearisen. To avoid offending the patient, you can preface thisrequest by explaining that you want to make sure you have beenclear.Refusal of Care  Simon 458  Annals  of    Emergency Medicine Volume  , .  :  October    Finally, after the patient expresses a choice, ask him or her toexplain the reason for the choice. This enquiry can shed light onall of the attributes of capacity. Some patients may give anunderstandable reason for an apparently surprising choice,leading one to accept that they have capacity. On the otherhand, a patient who gives an apparently inappropriate reason,such as “I have a hairdresser’s appointment tomorrow,” forrefusing admission for necrotizing fasciitis appears to lack atleast 1 of the attributes. Either the patient does not understandthe grave danger or, if he or she understands this on one level, isunable to take the logical step “If I die tonight, the appointmentdoesn’t matter.” If we assume the patient understands all this, we may conclude that he or she is not using a set of values andgoals because it is difficult to imagine a set of values that placesthe inconvenience of rescheduling the hairdresser above a highlikelihood of dying. Patients who can give no reason for theirdecision likewise lead us to conclude that they have no reason,raising doubts as to whether their decision is the result of rational informed deliberation rather than an unthinking whim.Thus far, in determining capacity, we have been focusing onthe rationality of the patient’s deliberations and not the choicehe or she is making. This focus on the deliberative processrather than the outcome emphasizes that we are evaluating a patient’s ability to engage in a process: autonomousdecisionmaking. However, does the particular choice the patientmakes have any broader role in our capacity determination?Does it matter whether the patient is agreeing or disagreeing  with us or how high the stakes are?To start by answering most generally, the patient’s decisionclearly has  some   role here. We begin all encounters with thepresumption that the patient has decisionmaking capacity. 5 Sometimes this presumption will be overcome by obviousdeficiencies in the patient’s mental status. However, other times,the first clue we have that an otherwise lucid patient may lack capacity is his unexpected refusal of what seems to us to be anobvious course of treatment. A patient who appears to be“irrationally” endangering his health or life warrants closerassessment, even if he is ultimately found to have capacity.Does the particular decision made have any role in ourcapacity assessment beyond triggering it? Does the process of assessment differ, depending on whether the patient agrees to orrefuses the proposed treatment or on the risk the patient isundertaking (even in agreeing with our recommendations)? Wear 5 claims that the answer to all these questions is no. Wear 5 argues that although the patient’s decision may be one of thetriggers for putting aside the presumption of capacity andengaging in a formal assessment (along with obvious behavioralabnormalities or anxiety, the presence of sedatives,developmental delays, hypoxia, and perhaps extreme old age 3,5 ),once we do initiate the assessment, we ignore these factors andfocus on the patient’s ability to carry out the decisionmaking process. The outcome of the process is not relevant, just as thesedatives are not as long as their presence is not affecting thepatient’s decision processes. Patients who agree with us areassessed just like patient who disagree, and the risks involved inthe decision do not affect the assessment either. Wear’s 5 primary motivation for this approach is that the physician, by making a recommendation, determines whether the patient’s choice is anagreement or disagreement, and likewise, it is the physician’srisk assessment that would be used under the alternative. Butthe physician’s personal beliefs about which course of action isbest and how risky various options are, are not strictly related tothe patient’s capacity and thus should not be considered in anassessment. The patient’s ability to understand these beliefs  is  relevant, but this can be assessed without attention to thepatient’s choice. (Wicclair 6 adopts a similar position.)Most commentators do not agree with Wear 5 and Wicclair, 6 arguing that the decision made by the patient is directly relevantto the assessment carried out. 1,3,7-9 Patients considering a risky treatment, even if they agree, and patients who refuse care (whoare presumably choosing a more risky option) should be held toa higher standard when their capacity is determined, which isoften referred to as the “sliding scale” of capacity. Patients mustdisplay a greater degree of capacity to make some decisions thanothers. In practice, this means requiring greater clarity andunderstanding from the patient before accepting a high-risk decision because this is the primary way patients demonstratetheir capacity. This requirement will often necessitate that wereceive more elaborate and specific answers in the assessmentoutlined above. Thus, whereas a patient consenting to a lumbarpuncture to evaluate a suspected subarachnoid hemorrhagecould give vague responses about a needle in the back to check for blood in the brain and be considered to have demonstratedcapacity, one who wanted to refuse this procedure would haveto demonstrate a clear understanding of the procedure (to show that he or she knows how relatively minor it is), as well as a clearunderstanding of the nature and risks of an undiagnosedsubarachnoid hemorrhage (so it is clear that he or she knows why detection is urgent). Similarly, a patient choosing betweenstenting and an operation on blocked carotid arteries mustevince greater understanding of the choices than one deciding  whether to have a small laceration sutured or Steri-stripped.The justification for this double standard is that we mustalways balance our respect for a patient’s autonomy, which, as we noted above, is expressed through their decisionmaking capacity, against our responsibility to protect the patient fromharm. Respect for autonomy in general takes precedence, butthe latter obligation is never absent. The more impaired thepatient’s autonomy and capacity, the less valuable protecting that autonomy becomes. At the same time, the greater the risk the patients would be taking on by their decision, the moresignificant the issue of protecting them from harm becomes. Inrequiring patients making risky decisions to demonstrate greatercapacity (and hence autonomy) through greater clarity of understanding and thought, we are seeking to balance our 2competing obligations. Patients who demonstrate that they haveno significant defect in their decisionmaking capacity will beallowed to make even high-risk decisions. As their degree of  Simon  Refusal of Care Volume  , .  :  October    Annals  of    Emergency Medicine  459
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